scholarly journals The role of digital communication in patient–clinician communication for NHS providers of specialist clinical services for young people [the Long-term conditions Young people Networked Communication (LYNC) study]: a mixed-methods study

2018 ◽  
Vol 6 (9) ◽  
pp. 1-270 ◽  
Author(s):  
Frances E Griffiths ◽  
Xavier Armoiry ◽  
Helen Atherton ◽  
Carol Bryce ◽  
Abigail Buckle ◽  
...  
Keyword(s):  
Young People ◽  
Health Outcomes ◽  
Outcome Measures ◽  
Qualitative Data ◽  
Digital Communication ◽  
Health Condition ◽  
Long Term Conditions ◽  
Routinely Collected Data ◽  
Scoping Reviews

BackgroundYoung people (aged 16–24 years) with long-term health conditions tend to disengage from health services, resulting in poor health outcomes. They are prolific users of digital communications. Innovative UK NHS clinicians use digital communication with these young people. The NHS plans to use digital communication with patients more widely.ObjectivesTo explore how health-care engagement can be improved using digital clinical communication (DCC); understand effects, impacts, costs and necessary safeguards; and provide critical analysis of its use, monitoring and evaluation.DesignObservational mixed-methods case studies; systematic scoping literature reviews; assessment of patient-reported outcome measures (PROMs); public and patient involvement; and consensus development through focus groups.SettingTwenty NHS specialist clinical teams from across England and Wales, providing care for 13 different long-term physical or mental health conditions.ParticipantsOne hundred and sixty-five young people aged 16–24 years living with a long-term health condition; 13 parents; 173 clinical team members; and 16 information governance specialists.InterventionsClinical teams and young people variously used mobile phone calls, text messages, e-mail and voice over internet protocol.Main outcome measuresEmpirical work – thematic and ethical analysis of qualitative data; annual direct costs; did not attend, accident and emergency attendance and hospital admission rates plus clinic-specific clinical outcomes. Scoping reviews–patient, health professional and service delivery outcomes and technical problems. PROMs: scale validity, relevance and credibility.Data sourcesObservation, interview, structured survey, routinely collected data, focus groups and peer-reviewed publications.ResultsDigital communication enables access for young people to the right clinician when it makes a difference for managing their health condition. This is valued as additional to traditional clinic appointments. This access challenges the nature and boundaries of therapeutic relationships, but can improve them, increase patient empowerment and enhance activation. Risks include increased dependence on clinicians, inadvertent disclosure of confidential information and communication failures, but clinicians and young people mitigate these risks. Workload increases and the main cost is staff time. Clinical teams had not evaluated the impact of their intervention and analysis of routinely collected data did not identify any impact. There are no currently used generic outcome measures, but the Patient Activation Measure and the Physicians’ Humanistic Behaviours Questionnaire are promising. Scoping reviews suggest DCC is acceptable to young people, but with no clear evidence of benefit except for mental health.LimitationsQualitative data were mostly from clinician enthusiasts. No interviews were achieved with young people who do not attend clinics. Clinicians struggled to estimate workload. Only eight full sets of routine data were available.ConclusionsTimely DCC is perceived as making a difference to health care and health outcomes for young people with long-term conditions, but this is not supported by evidence that measures health outcomes. Such communication is challenging and costly to provide, but valued by young people.Future workFuture development should distinguish digital communication replacing traditional clinic appointments and additional timely communication. Evaluation is needed that uses relevant generic outcomes.Study registrationTwo of the reviews in this study are registered as PROSPERO CRD42016035467 and CRD42016038792.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

scholarly journals Eliciting the impact of digital consulting for young people living with long term conditions (LYNC study): which Patient Reported Outcome Measure? (Preprint)

2018 ◽  
Author(s):  
Jackie Sturt ◽  
Rebecca Dliwayo ◽  
Vera Forjaz ◽  
Kathryn Hamilton ◽  
Carol Bryce ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Young People ◽  
Patient Reported Outcome ◽  
Clinical Psychologist ◽  
Long Term Conditions ◽  
Face To Face ◽  
Scoping Reviews ◽  
Patient Reported ◽  
The Impact

BACKGROUND Digital consulting e.g. email, text and skype is increasingly offered to young people accessing specialist care for long term conditions. No patient reported outcome measures (PROM) have been evaluated for assessing outcomes of digital consulting. Systematic and scoping reviews, alongside patient involvement revealed two candidate PROMs for this purpose, the Patient Activation Measure (PAM) and the Physician’s Humanistic Behaviours Questionnaire (PHBQ). PAM measures knowledge, beliefs and skills that enable people to manage their long term condition. The PHBQ measures the extent to which behaviours that are important to patients in their physician-patient interactions are present. OBJECTIVE To explore i) whether the PAM and the PHBQ elicit important outcomes of digital consulting ii) whether the PROMs can isolate the digital consultation component of care. METHODS Participants were drawn from five clinics providing specialist NHS care to 16-24yrs olds with long term health conditions participating in the wider LYNC study. Fourteen people were convenience sampled and consented to have a cognitive interview in this sub-study. Seven participants were young people with either inflammatory bowel disease, cystic fibrosis or cancer. Seven clinicians were clinical psychologist, two nurses, three consultants and a community youth worker practising in Cancer, Diabetes, Cystic Fibrosis and Liver disease. Cognitive interviews were transcribed and analysed and a spread sheet recorded participants’ PROM item appraisals. Illustrative quotes were extracted verbatim from the interviews for all participants. RESULTS Young people found 10 of the PAM 13 items to be relevant to digital consulting and fewer of the additional PAM 22 items. They were only able to provide a spontaneous examples of digital consulting for 50% of the 22 items. Four of the 6 clinicians appraised 12 of the PAM 13 items and 19 of the PAM 22 items to be relevant to evaluating digital consulting and articulated operationalisation of the items with reference to their own digital consulting practice with greater ease than the young people. Appraising the PHBQ, in 14 of the 25 items (56%) 2/3rds of young people’s appraisals offered digital consulting examples with ease suggesting that the young people can detect and discern humanistic clinician behaviours via digital as well as face to face communication channels. Seventeen of the 25 items (68%) were appraised as relevant by the young people. This finding was mirrored in the clinician appraisals. Both young people and clinicians found the research task complex. Young participants required considerably more researcher prompting to illicit examples related to digital consulting rather than their face to face care. CONCLUSIONS The PAM and the PHBQ have satisfactory face and content validity for evaluating digital consulting to warrant proceeding to psychometric evaluation. Completion instructions require revision to differentiate between digital and face to face consultations.

Arts-based interventions to promote transition outcomes for young people with long-term conditions: A review

2018 ◽  
Vol 16 (1) ◽  
pp. 23-40 ◽  
Author(s):  
J Callinan ◽  
I Coyne
Keyword(s):  
Young People ◽  
Outcome Measures ◽  
Transition Process ◽  
Self Esteem ◽  
Video Production ◽  
Long Term Conditions ◽  
Sound Recordings ◽  
Transition Outcomes ◽  
Adult Services

Objectives To conduct a systematic review of arts-based interventions promoting transition from paediatric to adult services for young people (Note: The term young people refers to adolescents and young adults.) with long-term conditions and to explore their effectiveness. Interventions Arts-based interventions included studies of young people who were actively participating in the intervention rather than passive observers. Visual arts interventions included film/video production, time-based media, photography, animation, sculpture, audio, installation, sound recordings, painting, textiles, print, mixed media, multimedia. Arts-based interventions included creative writing, poetry, dance, choreography and storytelling. Main outcome measures We included all outcome measures relevant to transition and any chronic condition. These included: self-care knowledge and skills, autonomy, continuity of care, adherence to treatment and attendance at appointments. Results Seven studies reported arts-based interventions promoting outcomes that are relevant to transition. These studies showed that arts-based interventions may influence young people with long-term conditions self-esteem, confidence and self-expression. The findings must be treated with caution as the evidence was weak with studies using qualitative measures and of poor methodological quality. Conclusions There is a need for further research of arts-based interventions for children and adolescents with long-term conditions that incorporate objective measurements or validated tools to assess outcomes relevant to the transition process.

scholarly journals M.I.C.E—Mental Health Intervention for Children with Epilepsy: a randomised controlled, multi-centre clinical trial evaluating the clinical and cost-effectiveness of MATCH-ADTC in addition to usual care compared to usual care alone for children and young people with common mental health disorders and epilepsy—study protocol

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Sophie D. Bennett ◽  
◽  
J. Helen Cross ◽  
Anna E. Coughtrey ◽  
Isobel Heyman ◽  
...  
Keyword(s):  
Mental Health ◽  
Young People ◽  
Usual Care ◽  
Psychological Intervention ◽  
Mental Health Disorders ◽  
Long Term Conditions ◽  
Children And Young People ◽  
Health Disorders ◽  
Randomised Controlled

Abstract Background Mental health disorders in the context of long-term conditions in children and young people are currently overlooked and undertreated. Evidence-based psychological treatments for common childhood mental health disorders (anxiety, depression and disruptive behaviour disorders) have not been systematically evaluated in young people with epilepsy despite their high prevalence in this population. The aim of this multi-site randomised controlled trial is to determine the clinical and cost-effectiveness of adding a modular psychological intervention to usual care for the mental health disorders in comparison to assessment-enhanced usual care alone. Methods In total, 334 participants aged 3–18 years attending epilepsy services will be screened for mental health disorders with the Strengths and Difficulties Questionnaire (SDQ) and the diagnostic Development and Wellbeing Assessment (DAWBA). Those identified as having a mental health disorder and consenting to the trial will be randomised to either receive up to 22 sessions of the modular psychological intervention (MATCH-ADTC) delivered over the telephone over 6 months by non-mental health professionals in addition to usual care or to assessment-enhanced usual care alone. Outcomes will be measured at baseline, 6 months and 12 months post-randomisation. It is hypothesised that MATCH-ADTC plus usual care will be superior to assessment-enhanced usual care in improving emotional and behavioural symptoms. The primary outcome is the SDQ reported by parents at 6 months. Secondary outcomes include parent-reported mental health measures such as the Revised Children’s Anxiety and Depression Scale, quality of life measures such as the Paediatric Quality of Life Inventory and physical health measures such as the Hague Seizure Severity Scale. Outcome assessors will be blinded to group assignment. Qualitative process evaluations and a health economic evaluation will also be completed. Discussion This trial aims to determine whether a systematic and integrated approach to the identification and treatment of mental health disorders in children and young people with epilepsy is clinically and cost-effective. The findings will contribute to policies and practice with regard to addressing mental health needs in children and young people with other long-term conditions. Trial registration ISRCTN ISRCTN57823197. Registered on 25 February 2019.

scholarly journals From informed consent to dissemination: Using participatory visual methods with young people with long-term conditions at different stages of research

2016 ◽  
Vol 11 (5-6) ◽  
pp. 636-650 ◽  
Author(s):  
Cecilia Vindrola-Padros ◽  
Ana Martins ◽  
Imelda Coyne ◽  
Gemma Bryan ◽  
Faith Gibson
Keyword(s):  
Informed Consent ◽  
Young People ◽  
Visual Methods ◽  
Long Term Conditions

scholarly journals How well do services for young people with long term conditions deliver features proposed to improve transition?

2018 ◽  
Vol 18 (1) ◽  
Author(s):  
A. Colver ◽  
◽  
R. Pearse ◽  
R. M. Watson ◽  
M. Fay ◽  
...  
Keyword(s):  
Young People ◽  
Long Term Conditions

Young people and developmentally appropriate transitional care in rheumatology

2013 ◽  
pp. 11-21
Author(s):  
Janet E. McDonagh ◽  
Helena Gleeson
Keyword(s):  
Young People ◽  
Transitional Care ◽  
Developmentally Appropriate ◽  
Adolescent And Young Adult ◽  
Adolescent Medicine ◽  
Psychosocial Needs ◽  
Long Term Conditions ◽  
Health And Illness ◽  
Youth Friendly

Young people are distinctly different from children and adults and as such require developmentally appropriate, youth-friendly rheumatology services to meet their medical and psychosocial needs. Adolescent development continues into the third decade of life and both influences and is affected by, health and illness (including) during this time. Effective transitional care in rheumatology is underpinned by the core principles of adolescent medicine, self-management of long-term conditions, and a developmentally appropriate, youth-friendly rheumatology service including staff trained in adolescent and young adult (AYA) health.

scholarly journals Community pharmacy advanced adherence services for children and young people with long-term conditions: A cross-sectional survey study

2020 ◽  
Vol 18 (1) ◽  
pp. 1720
Author(s):  
Zahra Alsairafi ◽  
Julie Mason ◽  
Natasha Davies ◽  
Molly Dennis ◽  
Gabrielle Pilgrim ◽  
...  
Keyword(s):  
Young People ◽  
Community Pharmacy ◽  
Survey Study ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Long Term Conditions ◽  
Children And Young People

scholarly journals What makes for a ‘good’ or ‘bad’ paediatric diabetes service from the viewpoint of children, young people, carers and clinicians? A synthesis of qualitative findings

2015 ◽  
Vol 100 (9) ◽  
pp. 826-833 ◽  
Author(s):  
Katherine Curtis-Tyler ◽  
Lisa Arai ◽  
Terence Stephenson ◽  
Helen Roberts
Keyword(s):  
Young People ◽  
Physical Health ◽  
Age Groups ◽  
Long Term Conditions ◽  
Children And Young People ◽  
Paediatric Diabetes ◽  
Experience Of Care ◽  
Crucial Part ◽  
Selection Of

BackgroundThere is mounting evidence that experience of care is a crucial part of the pathway for successful management of long-term conditions.Design and objectivesTo carry out (1) a systematic mapping of qualitative evidence to inform selection of studies for the second stage of the review; and (2) a narrative synthesis addressing the question, What makes for a ‘good’ or a ‘bad’ paediatric diabetes service from the viewpoint of children, young people, carers and clinicians?ResultsThe initial mapping identified 38 papers. From these, the findings of 20 diabetes-focused papers on the views on care of ≥650 children, parents and clinicians were synthesised. Only five studies included children under 11 years. Children and young people across all age groups valued positive, non-judgemental and relationship-based care that engaged with their social, as well as physical, health. Parents valued provision responsive to the circumstances of family life and coordinated across services. Clinicians wanting to engage with families beyond a child's immediate physical health described finding this hard to achieve in practice.LimitationsSocioeconomic status and ethnicity were poorly reported in the included studies.ConclusionsIn dealing with diabetes, and engaging with social health in a way valued by children, parents and clinicians, not only structural change, such as more time for consultation, but new skills for reworking relations in the consultation may be required.

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